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Hello from a newbie

7 years 6 months ago #40195 by PST
Hello everyone,

This is my first post here. Ordinarily when joining a new forum I would hang around a bit and get the lay of the land before joining in, but things are moving pretty fast for me. I was diagnosed yesterday (Friday) and I'm scheduled for TURBT Tuesday. I would like to describe my particulars, so if anyone has advice or warnings to give me I can benefit from their experience.

I am a 58-year-old man who has had over the last five or ten years very mild symptoms that I interpreted as the beginnings of benign prostate hyperplasia. However, in July and September of this year, I had serious urinary tract infections, and as a result I was advised rather firmly to schedule an appointment with a urologist. I picked a good one, so it took a while to get in. On Friday I had my first cystoscopy -- those will take some getting used to -- and had a single polyp-like tumor that the doctor described as about the size of the end of his little finger, may one to two cm. We talked about what is involved in TURBT and how I should prepare. He explained that my treatment and prognosis would depend a great deal on deeply the tumor penetrated. He said I would probably receive a single dose of mitomycin chemotherapy topically immediately after the resection. We were discussing a week from Tuesday, which would be November 29, but my paperwork and the hospital schedule now say November 22, and even if that started as a clerical mistake I'm inclined to go with it. I got most everything necessary for surgical clearance done yesterday.

I spent much of last night and this morning reading up on bladder cancer. I found a site geared to physicians called uptodate.com which was expensive but remarkably informative. A little part of me says slow down and think about your options, but the more I read about this the more I can't see any reason not to go full speed ahead. It doesn't look like there are a lot of choices to be made at this stage, although there may be major decisions later. You can't grade and stage the tumor without digging it out, so what is there to wait for?

One thing I could change is my urologist or hospital. Just because this guy diagnosed me doesn't mean I have to let him treat me. There is no reason to be afraid of bruising anyone's feelings. However, I don't see how I could do better within a hundred miles. The doctor is the long-time chairman of the urology department at a major medical school, and the hospital is a well regarded academic medical center with an excellent reputation in both urology and oncology. I was treated there eight years ago for colon cancer, very well I thought, and with success. I don't need a second opinion because apparently TURBT plus mitomycin is the consensus for what to do first. In many ways, it will be convenient to get this over with as soon as I can, even if a week or a month would be unlikely to affect my prognosis.

I can see already that this is likely to be much different than colon cancer was. There, if the initial treatment works, it works, and while you then face several years of worrying about a local recurrence or metastasis, for all practical purposes there is an end point. I'm getting the impression that bladder cancer is different. Even if the tumor has not penetrated muscle, and the resection gets every bit, and there is no metastasis, the changes that gave rise to the tumor in the first place may give rise to more. This looks like it could be a lifetime project, but what can you do?

Thanks for listening.

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